- Fibromyalgia
- Interviews
iamleila's interview
Do you already have a diagnosis? How long did it take you to get it?
Diagnosed about 1989,
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have seen Rheumatologists, and Primary care providers
What have been your biggest difficulties?
Handling flares and comorbidities. I don't have effective pain management tools for painful flares. There is no interest (by my healthcare providers) to consider my other ailments that may influence my pain.
How has your social and family environment reacted? Have your social or family relationships changed?
Because my fibromyalgia was well controlled no one knew, but once I began to have more attacks ( and ultimately became more often IN pain than out) , many people dropped away. They were unwilling to be educated about it and didn't understand pacing etc.
What things have you stopped doing?
Traveling - airplane rides exhaust me. After being on a 45 min flight am in pain and brain fog for 2 days.
I cant participate in social groups anymore because i can't commit to being there.
What do you think about the future?
I try not to. As I've gotten older the disease has been more aggressive. I don't even think about it getting worse.
So far, which years have been the best years in your life? What have you done during them?
my 20s & 30s, just after diagnosis and when I had flares now and then. In those times the pain was controllable with NSAIDS. I had a full life, was active with volunteering , going to college, moving often.
What would you like to do if you didn’t have your condition?
I would like to have continued to work and had a career. There are many things I had to stop doing that I miss,
If you had to describe your life in a sentence, what would it be?
A complicated mess with a little hope.
Finally, what advice would you give to a person in a similar situation?
Do your research, find any treatment you can afford and DO that until you can't or it stops working. Find support and familiarity with other folk suffering with chronic illness, esp online.
Be alert to other syndromes for unexplained symptoms - not every pain is fibro - if the pain changes it could be something else
